Living with ankylosing spondylitis: an open response survey exploring physical activity experiences

The aim was to gather in-depth, rich accounts of physical activity experiences of people living with AS, to include symptom management, consequences for symptoms, factors that encourage and disrupt physical activity, and motivations that underpin participation in physical activity.

Participants (n = 149; 60% female) completed a Bristol Online Survey that consisted of open questions to capture rich qualitative data. In total, 96% of participants self-reported having AS (1% other arthritis; 3% missing), and 51% had this diagnosis for >20 years. A content analysis was conducted to identify the key themes/factors from within the open question responses. A frequency analysis was used to ascertain the most commonly identified themes and factors.

Fifty different physical activities were participated in over the previous month. Physical activity can improve and worsen arthritis symptoms, and fluctuations in participation exist even in the most active. Pain and fatigue were the two most frequently identified factors that stopped people with AS from being physically active. Participants reported more autonomously driven motivations than controlled motivations for participating in physical activity.

People with AS can and do participate in a diverse range of physical activities, but fluctuations in activity levels occur owing to disease- and non-disease-specific factors. Individually tailored plans and self-monitoring are important to optimize levels of physical activity and maximize benefits for people living with AS. Multiple reasons why AS patients participate in physical activity were revealed that included both adaptive (i.e. autonomous) and maladaptive (i.e. controlled) forms of motivation.